Thursday, April 22, 2010

Wednesday, April 21, 2010

i like my body when it is with yourbody. It is so quite a new thing.Muscles better and nerves more.i like your body. i like what it does,i like its hows. i like to feel the spineof your body and its bones, and the trembling–firm–smooth ness and which i willagain and again and againkiss, i like kissing this and that of you,i like,, slowly stroking the, shocking fuzzof your electric fur, and what–is–it comesover parting flesh....And eyes big Love–crumbs,

Tuesday, April 20, 2010

Ally at a playground in NYC

Tuesday, April 20, 2010 8:02 PM, EDT

Ally was wonderful for the medication. She fell back into the old routine of "chewing" the softened gel caps. She didn't mind the taste at all. Hopefully her skin won't get too bad and I forgot, it can alter her mood....let's hope that doesn't happen!Ally has a blood draw on Friday, to make sure the new med is not too harmful. That is all that is planned for this week. Hopefully there will be lots of shade so Ally can play outside. (2 of her meds require her to stay out of the sun.)

Thanks for checking in...it is very nice to be home again.

P.S.: 3f8 schedule as follows: first 4 rounds are 4 weeks apart, then any rounds after that are 8 weeks apart. This can go for 2 years from her original start date. The whole schedule/plan changes if Ally becomes HAMA positive.

Monday, April 19, 2010

Monday, April 19, 2010 8:58 PM, EDTWe made it home. The hospital did everything in their power to make sure it was a very stressful day. They pushed her bone marrows back, no one was helpful and there seemed to be an attitude of uncaring about our situation. They also made a new rule that Ally had to drink water before she could leave. She was still groggy and refused to drink, after 3-4 minutes of pleading with her so we could make our train I ended up pouring water on her and just saying to the nurse that she drank some. It was the icing on the cake. Then the whole NYC situation ended with Grampa and Mommy and Ally having to meet on the streets of NYC 1/2 way between the hospital and the Ronald and hailing a taxi there. We are in contact with a patient advocate. They have done some research and the woman has said she found some things that the hospital did not do well. Several different things. We now have a contact person in the neuroblastoma team and things should run much smoother in the future. Ally did a good job on the almost 5+ hour train ride home. (The train was delayed and then we had to make extra stops because they are doing construction on the tracks.) It was VERY nice to see Daddy at the train station.

Tomorrow Ally begins 2 weeks of a medicine she used before. The big side effect is extremely dry skin/lips and avoiding the sun. They are gel caps, so we are hoping she will be able to take them the way she did over a year ago. We warmed it up in warm water for about 20 seconds, and then she just popped it in her mouth and chewed and swallowed.

That's about it for now, it was a super long day. We are looking forward to 3 weeks off.

Sunday, April 18, 2010 4:06 PM, EDT We had an AWESOME morning! We headed to the Central Park Zoo around 9:30 this morning, and got there just as it opened at 10:00. Ally LOVED it!!!! She was timid at first, and wouldn't get out of her stroller. Then, when we got to the penguins she hopped out and was so excited! We spent about 10 minutes watching them swim, dive and jump out of the water. The penguins love people, as they were playing and splashing the walls where we stood. It was fun. We then headed to the polar bears and saw one stand up on his hind legs. Ally is pretty sure the 2 we saw were the Grammy and Grampa Polar Bears, and the Mommy and Daddy had to go to work. We saw monkeys and other little critters next. Then we headed to the rainforest exhibit. It was hot in there, but Ally actually wanted out of her stroller and checked out all of the birds and snakes. Finally we headed to the "petting zoo" part. (There was very little to actually pet.) Ally had tons of fun here too. She loved the piggies and a nice man gave Ally a couple bits of food to feed the goats. Ally actually fed the goats! Generally she is afraid of things like that. We have some great pictures I hope to upload later this week. Ally fell asleep again on the walk back to the Ronald. When we got back she woke up and had some pancake and 3 different kinds of cereal. Then we played in the room for a bit, attempted to go to the playroom (but it was taken over by a photographer) so we are just relaxing in the room again. We think we will try a NYC diner for dinner tonight.

Please keep us in your thoughts tomorrow. Ally has bone marrows planned, and the timing is still wonky, so it may make us miss our train. Hopefully I can update from New Hampshire tomorrow night, and not from NYC!

Saturday, April 17, 2010

Saturday, April 17, 2010 1:31 PM, EDT This morning Ally slept until almost 8:00, very late for her. She then declared the boat would be too cold, so she would not be going on it. Oh well.....We did manage to get her in the stroller and we walked to FAO Schwarz. She had a blast. We ended up coming home with an Oscar the Grouch and a Very Hungry Caterpillar. We also saw lots of horses near central park. Ally actually fell asleep for about 20 minutes on the walk home, so we will see what that does for a nap later in the day.Right now she is busy playing in the room, soon I am going to attempt a nap for her and me, and then we will probably head to the playroom. It is a bit cold and rainy out, so we will probably be inside for the rest of the day....we do have some special NYC cupcakes for an after nap snack....yum!We are having a bit of a scheduling issue for Monday's Bone Marrows, please pray that things work out and we don't have to change our travel plans yet again.

Friday, April 16, 2010

Friday, April 16, 2010 11:05 AM, EDT We are all done with injections and 3f8!!!

Ally did a fantastic job today. She had pain for about 30 minutes. She kept yelling, "Ouchies get out of here! Go away ouchies!" She is resting comfortably right now, every now and then itching her face, as the narcotics make her itchy.

Tomorrow the Ronald McDonald House is putting on a trip to the Circle Line, which is a boat that gives a tour of the city. We are hoping Ally is willing to go. It is supposed to rain here, but the boats are covered. We are then hoping to visit the zoo on Sunday.

Right now, we have a 9:00 appointment for her bone marrows on Monday. They also want a once over of her. The nurse practitioner with us today told everyone involved that we had a train to catch on Monday, so they needed to be quick about everything. The great thing is that Daddy is working this weekend, so he has Monday off and can pick us up in Boston, on Monday, Patriots' Day, aka, Boston Marathon day. We sure do get good travel days! (Read that last part with sarcasm for the craziness of Boston, or with a smile for the lack of rush hour traffic.)

We are now just letting Ally sleep it off a while.

PS We did get Ally to go to the park yesterday afternoon. She went down slides and swung for a long time. She had a good time.

Thursday, April 15, 2010

Thursday, April 15, 2010 4:35 PM, EDT Awesome Ally did great again today. The pain didn't begin until the very end of the infusion. This is good, because it only lasted about 30 minutes, but the anticipation is horrible. Usually she starts in about 10-15 minutes into the infusion, but today I was on edge waiting for it to start. She needed all of her rescues, plus some extra meds because her lips were swollen and the hives were not going away. I even had to give her more hive medication when we got back to the Ronald. She did some good sleeping at the hospital, but was not interested in napping, resting or any of that when we got back. Around 1:30 she was ready to head to the playroom and have something to eat. She was a little irritable, but now she is happily watching TV. She is not really interested in being outside right now, hopefully she will this weekend. It is nice out here.

Wednesday, April 14, 2010

Wednesday, April 14, 2010 4:05 PM, EDT

Ally did a great job today. She gets a pain patch (a tiny little clear band-aid type thing on her back) and she is getting full "rescues" (IV narcotics) during the treatment. Apparently this is more pain meds than most of the kids require. She has built up a good tolerance to pain meds. She is resting comfortably now.

Last night I did need to give her a small dose of the pain meds we have with us. She had a small fever (99.2), but when she "snapped" out of it her fever went away too.Ally is a very popular girl in the 3f8 wing here. Everyone seems to know who she is, and they all love her. It is nice when she gets so many smiles.

Grampa arrived today, and Auntie is heading elsewhere. We are very thankful she could start the week with us; she has been super helpful, and Mommy is 100% sure she would have snapped or broken down in some way if Auntie had not been here. Hopefully Grampa can live up to that!! (He he, I am sure he will.)

Tuesday, April 13, 2010

listener:

So, Ally and her Mom have to stay in NYC over the weekend so Ally can have one more test on Monday. Turns out it's bone marrow related. Ouchy! At least her Grampa (my brother-in-law) is going to NYC for the weekend, and is going to see about taking them to the Zoo! :~D

Tuesday, April 13, 2010 1:30 PM, EDT Today was much easier. We started around 9:30 and were able to leave the hospital around 1:00. Ally was able to fall asleep at the hospital, and we are currently sharing a twin sized bed for snuggling. Somehow she has managed to get herself in the center of the bed, leaving little room for me.The Doctor (whom I am still not happy with, but 5 days of being able to calm down made me civil) came today to check in. He was very pleased with how well Ally is reacting to treatment and that she is gaining weight. We still have to stay until Monday though....grrrr. Perhaps Ally will be up for a trip to the central park zoo this weekend.

A funny story I forgot that happened yesterday:We brought a stroller with us this time and I was pushing Ally to the elevator in the hospital. We generally have a rule that Ally has to walk inside, so when she got to stay in the stroller she was surprised. I said that we were treating her like a princess, and she replied that we were treating Oscar (who was sitting on her lap) like a whale. Not sure what she meant by that, but it was hilarious at the time.

Monday, April 12, 2010

Verse and Chorus for Nine Survivors

1.

The time and space of you are gone,enclosed in silver cloth and secret wood.The prayer said, we leavethe lid and the first earthto the workmen.We've buried you again, andthis time, with youon this clear and perfect day,some of us.We turn. We talk of how earlySpring has come,of peach trees so soon in bloom, March only,of the forsythia flame that quiversas a golden snow.The violets in your handstremble, full of dark, burn inward,begin to infest your flesh.

2.

There is nothing new about death;it happens all the time.Earlier, somewhat, a dam in West Virginiahas broken; a manamong the mud clutchesa photograph: a family smilingon a summer picnic -- vanishednow into a wall of slag water.He stares.Our lives are not disturbedlike that,broken open and bleedingto the clean tear of the camera lens.

The mine exploded in '26.One woman still waits.a sealed coal mine can burn for fifty yearsShe comes each Saturdayand brings a growing thingto place at the door markedDANGER! in small letters.There are not even ashes nowfor urn or fireplace.

Further east, a dark farmerreleases a tire from his stream,caresses its slick skin as if it were a carp,sighs and heaves it aside.The stream runs clear again.Prayer for living inthose muscles.In a century perhaps we will survive.

3.

There was nothing we could do.Brother, our mother dreams our fathergreets you. Strangers to youinsist you're happy now, yet they linger.For me, this ground is not tearlessand Spring not come, and no returnhere to this lumpy green is possible.Only: let the flowersI placed in your chemical handstake root and grow in your alonenessthat 50 or 75 years hencethis ground, swollen with sweetnesswill rise and break and spew outyour violet-rotted bones,and the fields drown inyour purple flood, that ourchildren at least, may seewhat we have done,and the spring run clean again.

Friday, April 09, 2010

Friday, April 9, 2010 3:21 PM, EDT

In my head this is how the phone conversation went:

MSKCC: "Hello, Ally's Family? We don't care about your personal plans, or any travel arrangements you have already made. You will now spend an extra weekend in a very expensive city so we can run a 3 minute test on the 19th, instead of the 16th, like we told you a month ago. Oh yeah, we are not going to tell you what time of day that test is going to be until late in the day on the 16th, so you can't book your train ticket home until the last minute, when the prices are more expensive."Me: "We have to do what is best for Ally, but I find this completely unacceptable."

If only I had been that cool.

So.....it looks like we will be spending some extra time in NYC. It also looks like Auntie Kelly will have to hold me back on Monday morning when I see a certain doctor.

Wednesday, April 07, 2010

Wednesday, April 7, 2010 10:49 AM, EDT

I e-mailed Ally’s cancer center this morning and got word back that Ally is indeed HAMA negative and we are going ahead with the 3f8 treatments next week in NYC! Yeah!Ally’s great aunt listener adds: Okay! Now it’s officially Easter and Spring!

Tuesday, April 06, 2010

Tuesday, April 6, 2010 6:02 PM, EDT So yesterday a certain person *cough* Daddy *cough* informed me that the NYC Hospital might not actually call. They informed this person *cough* Daddy *cough* that if things were busy, and Ally's test was negative, they sometimes don't call. The old, "No news, is good news" scenario. Awesome. One more way to make us feel secure in this journey. (Make sure you read that last part with sarcasm.)

So....we haven't heard anything, so we are going to go under the assumption Ally's HAMA is negative and we are headed to NYC next week. I think I just might send some e-mails tomorrow to double check though......

Monday, April 05, 2010

Sunday, April 04, 2010

Sunday, April 4, 2010 4:34 PM, EDT

We have had such a great weekend! Yesterday we celebrated Grammy's birthday. Ally has a fantastic time playing outside and finding Easter Eggs. Today Ally found even more Easter Eggs, got ice cream, played at the park, met the REAL EASTER BUNNY, and played outside pretty much all day. We have not even had time to dye eggs yet, because she has been so busy. This afternoon, after we returned from the park, our neighbor got our attention and showed us the REAL EASTER BUNNY!!! She came hopping across the street, shook Ally's hand, and patted Oscar on the head. Ally was very impressed the Easter Bunny took time out of her day to visit. Of course, there is no digital evidence of this chance encounter, but we are sure Ally will be talking about it for days to come.We should hear about Ally's HAMA test on Tuesday...we are looking for a negative test! I will be sure to let you all know when the doctor calls to let me know.

Thursday, April 01, 2010

The sweater that Ally is wearing in this photo was made by Ally’s Great Grammie, for Ally’s Mom. (Ally’s Great Grammie died in 1981, at age 61, of pancreatic cancer.) It is awesome that they saved this sweater....melts our hearts!

Tomorrow is Ally's blood draw for her HAMA test. (We say HAMA as if you were saying hammer and lived in New England; very fun the first time you are telling someone about it.)We will not know test results until next week. They evaluate the test on Tuesday; so I hope we know Tuesday afternoon or sometime on Wednesday. We are hoping for a negative test. This test will tell us how Ally's body is reacting to the 3f8 treatment. If the test comes back negative then we are on for her next round of 3f8 in April. If it comes back positive it means her body is rejecting the 3f8 treatment and we will need to change our plan.

In the meantime....Ally has had a great week so far. She is talking non-stop and has lots of energy. She is looking forward to some sun and warmth the next couple of days so she can make it out to her playhouse!

We have plans to celebrate Grammy's 29th birthday this weekend and do some Easter activities.

About Me

Water gathering
most days I wait
through blue and sun
till dusk
or even later
and the rose has faded
to lavender, to gray
some days, the sleet
has started
and the leaves underfoot
are slick with ice
somehow I'm never sorry
and never learn
one night I waited
till the stars were out
dropped the bucket into
sound, only felt the weight
of it filling
and the night full of stars
and the river full of stars
and the bucket full of stars
come morning, the coffee
is also full of stars